Key Principles of Community Engagement

This course aims to teach people how to enhance the recruitment of racial and ethnic minorities in clinical trials. Key topics include the importance of diversity in clinical trials, barriers and facilitators to participation in clinical research, community engagement, effective communication, educating about clinical trials, provider outreach, effective prescreening and enrollment, person-centered consent, and retention. Anyone with the potential to recruit can benefit from this course, whether working in a clinical setting or in the community.
The course is split into 8 weeks. You may work at your own pace and finish the course faster, if you would like. We encourage you to take the quizzes to help you learn the material. The course is free to enroll and take. You will be offered the option of purchasing a certificate of completion, which you will receive if you successfully complete the course requirements. This can be an excellent way of staying motivated! Financial aid is also available.
Acknowledgments:
We would like to acknowledge the following members from the Center for Knowledge Management at Vanderbilt University Medical Center for their expertise and ongoing insightful contribution in the development and implementation of the course: Sheila Kusnoor, PhD, Elizabeth Frakes, MSIS, Helen Naylor, MS, Mallory Blasingame, MA, Taneya Koonce, MSLS, MPH, and Nunzia Bettinsoli Giuse, MD, MLS.
We would also like to acknowledge ArtMagic Labs, particularly Casey Culver, John Martinez, and Robert Eva, for their outstanding work in filming and editing the videos for the course.
The Recruitment Innovation Center and members of the Meharry-Vanderbilt Alliance lead the efforts behind the Faster Together project. Together they have led the development of this training.
This work is supported by the National Center for Advancing Translational Sciences, National Institutes of Health, under the award number U24TR001579.

学習するスキル

Recruiting, Clinical Trial

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Module 2: Key Principles of Community Engagement

This lesson begins by describing the need to look at one’s own biases. Next, we review effective ways to engage with the community to make recruitment easier. We discuss the steps needed to make community partnerships. Finally, we show how community partnerships can increase recruitment for minority populations.

講師

Tiffany L. Israel

Community Navigator, Co-Instructor, VU

Consuelo Wilkins

M.D., M.S.C.I.

Margo Michaels

Adjunct Clinical Associate Professor

Yvonne Joosten

Executive Director, Office for Community Engagement

字幕

My name is Yvonne Joosten, and I'm with the Vanderbilt University Medical Center. In this training station, the second in a series on minority recruitment for clinical trials, we will be talking about bias, both personal and institutional impacts minority recruitment. We will cover the importance of getting to know the community you are interested in, and how to learn about those communities. We will also look at how community-based organizations can be valuable partners in helping you meet your minority recruitment goals, and the best ways to build those partnerships. In the first session of this course, we talked about bias which is defined as, "A prejudice in favor of or against one thing, person or group compared with another. Usually in a way that's considered to be unfair." You've probably heard about provider bias in health care delivery. Now, let's dig a little deeper into the topic of bias focusing on how it impacts you and every other human, and how it might manifest at the institution you work with. It's important to understand the nature of bias. Putting things into categories is a normal part of human cognition. It's something we all do as a way of making sense to the world. But it also gives rise to stereotyping and discrimination. There are two types of individual bias. Conscious bias also known as explicit bias, and unconscious bias or implicit bias. Bias whether conscious or unconscious is not limited to ethnicity and race. It may also exist toward any social group, age, gender, gender identity, physical abilities, religion, sexual orientation, weight, and many other characteristics are subject to bias. Conscious or explicit bias manifests itself in overt forms of discrimination, and are easily identifiable. We have laws that prohibit discrimination based on race, color, religion, sex or national origin, yet we still see many examples of overt bias today, particularly with regard to religious groups, immigrants, and gender minorities. This can lead to hate speech and hate crimes. Unconscious bias or implicit bias consists of social stereotypes about certain groups of people, that individuals form in their own conscious awareness. Everyone holds unconscious beliefs about various social and identity groups, and these biases stem from one's tendency to organize social worlds by categorizing them. Unconscious bias is also far more prevalent, and maybe incompatible with your conscious values. Unconscious bias can negatively impact how you interact with people as you attempt to recruit them to participate in your research studies. We all think that we don't have biases. For our first activity, we're going to challenge that belief by taking an implicit bias test. In a moment, this video will pause and a link to Harvard's Project Implicit will appear. Please visit the website, and choose any one of the tests. When you're done, return and resume lesson two. We have biases that we are not aware of, but they don't have to govern our behavior. Here are some practices to help you overcome your unconscious biases. Become more self-aware, taking the bias test helps, recognize when you have negative reactions to individuals or groups, examine honestly why you're having those reactions, work to understand the nature of bias. Remember, everyone has bias. It's part of human nature, but can be overcome, and doesn't have to dictate how you interact with others. Contrast negative stereotypes with positive ones. Expose yourself to images or ideas that go against negative stereotypes, and individuate. This means make an effort to get to know people from other groups. Focus on personal attributes rather than stereotypes. How does implicit bias impact research recruitment? We may make assumptions about whether or not members of certain groups are willing to participate in research. As you learned in module one, researchers often believe that minorities are less likely to volunteer for research. We may be less inclined to ask minorities to volunteer because if we do, we may feel that the barriers to their participation or concerns are insurmountable. We may not feel comfortable interacting with people who are different from us, and this can impact our ability to communicate or show empathy. We may have a negative view of certain communities based on media images as well as health challenges that are attributed to lifestyle choices, and unhealthy behavior, and we assume that members of that community may not make reliable research volunteers. It's not uncommon for institutions to operate in ways that favor certain groups over others. You learned in the first session of this training that minority groups may be treated differently by healthcare providers, and they may be less likely to be invited to participate in research. Institutional bias is rarely the result of conscious or explicit bias, but rather a manifestation of the unconscious bias of its leaders, and the policies that do not prioritize equity. Here are some examples of how institutional bias may impact minority participation in research. In hiring practices, minority groups are still greatly under-represented among research personnel. Research training and academic experience of course are prioritized over interpersonal skills, and the ability to communicate with different groups of people. While concordance between research staff and the community is not absolutely essential, it does help for example to hire an African-American, to recruit an African-American community. At the very least, it's important to hire recruitment staff who are comfortable with, and have experience working with communities, and are knowledgeable about the community. Typical recruitment flyers look like this. They are text dense, the reading level is high, they have lots of medical jargon, they use clinical terms, they lack color and images. People who are unfamiliar with clinical trials may be unlikely to pick this up and read it. It's also daunting for those with low literacy skills or low English proficiency. In session three of this training, you will learn how simple changes to the words and the look of your recruitment flyers can make a huge difference. Researchers also tend to go back to the same media channels to get their message out. Newspapers, public radio, online recruitment tools, and patient portals are great for reaching out to individuals who are familiar with research, and most likely to volunteer for your studies. But these channels often do not reach minority populations. Research institutions also may unwittingly discourage minority participation through its routine policies and practices such as always using the medical campus at the performance site. Medical campuses are usually big and they can be very confusing and difficult to navigate,. Parking can be challenging or the location may not be accessible to people who lack transportation. Scheduling research activities during normal business hours effectively prevents the participation of people who do not have flexible work schedules or school schedules. Using rigid exclusion criteria may eliminate people who want to participate. But because of minor health conditions, can't.